Help, Even More Than You Need

by the other theo

How ironic that a simple scholar, with no ambition, beyond a modest measure of seclusion, should out of the clear sky, find himself besieged by an army of fellow creatures, all grimly determined to be of service. – Dr. Edward Morbius, Forbidden Planet

Having a son with special needs, it’s easy to see how there will be times when help won’t be there when you need it.   The thing that is not as obvious but equally true is that sometimes there is more help being offered than what you need or want.  What do you do about that?

A case in point: after a rocky start to the school year, the Peanut settled nicely into his new schedule for school and speech therapy by mid-October.  For about six weeks, everything was GO: the Peanut made progress, our costs were down, and we looked forward to the rest of the school year.   We needed to remain wary.  At the start of December, the Peanut’s speech therapist that she was switching schools within the School District (to one closer to where we live) and that the Peanut would start seeing someone new in the next week.   After a single hand off session where both the old and new therapists were present, we got further news.   Because of problems with her therapy license, the new therapist would not be able to start until after the Christmas break.

Meanwhile, the Missus and I had an action item left over from the Peanut’s parent-teacher conferences back in October.   An open item on the Peanut’s IEP (or Individualized Education Program – the agreement about what classroom accommodations and services the School District agrees to provide) was to have him evaluated by a school psychologist to see if classes to help him with his social skills would be a good fit.   That seemed like a good idea; while the Peanut seems to be rather bright and has a sunny disposition, we don’t see him engage in much cooperative play.   Now that either could be because both his parents were pretty happy playing by themselves as children, or it could be because his inability to talk is getting in the way.   We don’t know.   I sent the necessary paperwork for evaluation in back in early November (I think) and we heard nothing for weeks.

In mid-December, I finally called the Special Ed department of the School District and left a message (all calls to the published number on the School District web site seem to go to department secretary’s voice mail.)  First, I asked if the Peanut could keep seeing his old therapist.   She is now working at a school closer to our home, and we liked that they made progress together.   Second, I asked about the evaluation with the psychologist.

That second item was the one that attracted attention.  We got a call from a psychologist a few days later.  She wanted to see the Peanut in his regular preschool class, and arranged to observe him during the last class before Christmas vacation.   That went reasonably well, but it was hardly a typical day for the class and she could only observe him for about 45 minutes.   She called us later, saying that she wanted to observe him again on a more normal day and to also have an IEP meeting with us and his speech therapist to discuss further evaluation.   She arranged the meeting time with the speech therapist and we confirmed.

The meeting turned into a bit of a mess.   The speech therapist asked that the meeting take place in her therapy classroom.  When the psychologist, the Missus, and I showed up the therapist was nowhere to be found.   A visit to the school office did not help because they had no clue what was going on.   Eventually, we learned that the new therapist had left the district.  We also met with the psychologist in the school principal’s office and we agreed to pursue further evaluation for services.

This is now where the “too much help” part comes in.

The Missus and I were unimpressed with how events that directly affected the Peanut’s speech therapy were communicated to us, to say the least.  They essentially weren’t, and the Peanut’s therapy seemed to be falling through the cracks.   That prompted a series of phone calls between the Missus and the woman who schedules speech therapy for the District.  The woman seemed properly contrite about the mix up and informed the Missus that a new therapist would be starting right way.   The Missus asked if the Peanut could continue with his old therapist since she was now closer to where we live.  The answer to that was ultimately no, because there was no room in his old therapist’s schedule.  Instead, another alternative was presented: there was a therapist at our neighborhood elementary school that could take him.   The Missus and I talked it over and made a counter offer: could we see the Peanut with both therapists and then choose where we went next?   That idea was well received and I agreed to take the Peanut to our neighborhood school since the Missus would be working that day.   We both agreed to meet the replacement to his old therapist the following day.

The trip to the neighborhood school started out a little rough.  I went to the school office and asked to see the name I was given.   No one there knew who she was.   The regular speech therapist at that school was called, and she knew where to direct us.    I soon learned why this person’s name was not familiar in the office: this therapist was newly assigned to this school to perform IEP evaluations of students, not regularly treat them.    Beyond that, she seemed both pleasant and capable.  The Peanut seemed fascinated with the new environment, and spent much of his time wandering around the room.  The therapist seemed to understand that this was happening, and took it in stride as best as she could.

Talking with her, the nature of the offer to work with her became clear quickly.  It was something of a special accommodation.  Now whether that was because the District knew they screwed up and wanted the opportunity to mollify us, I don’t know.   They just heard that we might be happier if we could go somewhere closer to where we lived.   So, they offered us the opportunity to do that, and talked up the qualifications of the person who would work with the Peanut, if we did.   It was very well meaning and designed to be helpful, but I also quickly learned that it underlined a lack of global understanding of what was going on with the Peanut’s IEP.

The reaction to the new room caused the therapist to raise a point no one else bothered to mention until then:  if the upcoming evaluation by the psychologist resulted in placing the Peanut in a pre-K Special Ed class to work on his social skills, a new speech therapist would be assigned to him to work in conjunction with the class at the school he would attend.   I immediately understood the potential problem with that.  It took the Peanut a few weeks to adjust to his new schedule in the Fall and I’d just scheduled the evaluation with the psychologist in 3 weeks and a meeting to discuss the findings in 5 weeks.   Given that schedule, the Peanut just might just be getting used to the new school, new room, new therapist, and new therapy schedule at about the time when it all might have to change again.    It was not conducive to good progress this year.

After I shared that bit of insight with the Missus, she and I agreed that we would choose the therapist at the school where he saw his old therapist if he got along reasonably well with her the next day.   The school, the room, and the schedule would be the same.   With fewer variables, there was the possibility of greater progress.

The appointment did go reasonably well.  We got there a little late.  Of the two, the second therapist was perhaps a little less personable.   That’s not a problem, as long as she understands what the Peanut needs and gives it to him.    She was all business and made sure to get some time to get some work with the Peanut in even though they started late.    In the end, we went with her.

The whole process felt typical of what we have experienced so far with the Peanut.   We, as parents, look to a circle experts to help us understand and deal with the Peanut’s apraxia. Some are experts on medicine, some in education, and some in navigating bureaucracy.  These experts generally mean well, but their advice and actions can appear to be confusing and, in some cases, contradictory.   We, the parents, are let into this circle more or less as peers because we are experts on our son.   We often know little to nothing about the other areas of expertise, but it falls to us to separate what’s meaningful for the Peanut from all the noise.   I guess that’s called “advocating for our son.”

Sometimes too much help creates noise, and it can be the toughest kind of noise to filter out.